Baby can’t be hugged due to a rare illnesses called recessive dystrophic epidermolysis bullosa. A baby girl named Kiira Kinkle, born in California, can’t be hugged nor touched, otherwise, her skin will blister or tear.
The story of a baby that can’t be hugged, touched, or have any kind of skin contact due to a rare disease, is grabbing headlines, according to The Inquisitr.
In October 2014, a California couple, Kirsti and Jason Kinkle, welcomed a baby girl named Kiira Kinkle.
Very soon after the birth, the parents learned that their baby can’t be hugged because she is suffering from dystrophic epidermolysis bullosa also known as Dystrophic EB. Dystrophic EB, which affects one of every 20,000 newborns, is described as followed:
Epidermolysis bullosa dystrophica or Dystrophic EB (DEB) is an inherited disease affecting the skin and other organs. “Butterfly children” is the term given to those born with the disease, as their skin is seen to be as delicate and fragile as that of a butterfly.
Kiira, the butterfly baby’s skin, is extremely fragile and any physical contact will cause her pain, tears, and blisters that will take years to heal.
The couple’s two other daughters, ages 2 and 4, have also understood that the 4-month-old baby can’t be hugged, they can’t touch her hands, or feet, and must be extremely careful when they play with her.
Kiira’s parents spoke to local media and explained that they have to spend hours every day, wrapping bandages around their baby’s fingers and toes to protect them from rubbing against each other.
To give the newborn a bath, they have to wrap her in a soft blanket and must go through the same procedure in order to pick her up, and move her around.
Mrs Kinkle confessed that the disorder is indeed, “the worst disease you never heard of” – which is a well-known phrase used by DEBRA, the Dystrophic Epidermolysis Bullosa Research Association of America.
The mother of three went on to add :
“I never would wish this upon anyone, knowing she is going to live a life of pain.”
The parents of the baby, who can’t be hugged, have to spend more than $30,000 on bandages and other medical expenses. For those willing to make a donation to the family, visit kiirakinkle.com to do so.
The Dystrophic Epidermolysis Bullosa Research Association of America’s executive director, Brett Kopelan, who has a 7-year-old daughter, Rafi, battling the disorder, explained that:
“A little piece of your heart kind of breaks every day.It’s hard. It’s really hard to inflict pain on your child every day. This disease is about pain.”
Like Rafi, Kiira might never be able to wear shoes and might have to go to school on a wheelchair in order to avoid frictions and blisters.
Eating might be difficult and she may need a bone narrow transplant in order to expand her life expectancy.
A baby can’t be hugged, but is surrounded by people who really love her.
My prayers go out to you and your family! Such a beautiful little angel Kiira is and to have to go through this must be heart wrenching to say the least! May God look down upon you and give you the strength required to persevere this most horrible of ordeals and bless this child. She is absolutely beautiful and my prayers, how little that is right now, will include this little angel!